It's so hard to say goodbye to tomorrow (2022)
D@mn, this is hard to write, and I’ve barely even started.
So if you know me at all, you know that I’m not exactly known for my brevity. I can, and will try not to be too verbose right now, but I don’t know if I will succeed, so apologies in advance if I don’t. I’m going to really make an effort, though.
Growing up, one of the apartments my family and I lived in was pretty close to the swimming pool. Even though for the longest time I could not swim (and I’m still not a strong swimmer, even now), I liked water a lot and therefore enjoyed being in the pool. Sometimes, however, the temperature of the water wasn’t initially pleasing to the touch; it was COLD! Usually one’s body would become acclimated after immersion, though, so it felt better once a little time had passed. But those few seconds (minutes?) before you adjusted to it were brutal!
Given this, some kids chose to simply jump into the water and endure all the cold at once. They preferred to just “get it over with.” I always felt a mix of admiration and apprehension when I pondered their decision. I couldn’t fathom doing that. I preferred to gradually ease myself into the frigid water, lowering my body slowly inch by inch until I reached the desired depth. It took longer, and maybe it was less efficient than just jumping in and being immediately done with the sensation of cold. But that was the way that worked for me/felt most bearable to me.
Writing this doesn’t feel like that. It feels like I’m just leaping into the water rather than taking my time to get used to it. It’s daunting. But I have to do it this way because sometimes one does not have the luxury of time and preference. Sometimes you gotta do what you gotta do, you know?
There’s no easy way to say this…but basically, my future is uncertain. (And my first thought after typing that is that I should delete it because it’s way imprecise. Of course my future is uncertain; everyone’s future is uncertain. A meteorite could strike the planet and take us all out in the next few minutes. Or any one of us could suddenly stop breathing or the roof could collapse and crush us…anything can happen. Let’s try that again, shall we?)
I have been diagnosed with a neurodegenerative condition that is very atypical for someone my age. It does not have a cure, and in worst case scenarios, it leads to (typically premature) death. There is NO indication that I’m going to be a worst case scenario. For all I know, I could be a best case scenario and thrive for decades and decades and be around to be an octogenarian or nonagenarian whose great-grandchildren crawl into my lap and play around with the wrinkles on my face while I giggle with joy at their silliness. I do not have enough information to determine what the trajectory will be for me, so I don’t see the benefit in panicking and becoming histrionic over the unknown.
I do, however, see the benefit in disclosing this because as a friend told me recently, it’s better to do it my way and on my terms rather than have circumstances dictate that for me. I’m still coming to terms with all of this myself, and I can truthfully say that I have not fully processed it yet. I also feel a little self-conscious about what I’m doing because for all I know I could present as relatively unaffected for the next umpteen years and in hindsight this might appear like some kind of play for sympathy and/or attention. Yet “on the other hand,” although no one should feel like they “owe” disclosure of their personal affairs and/or health to any other human being(s) - unless said individual(s) might be otherwise impacted - it feels, at least to me, dishonest not to share because some of the changes that have been and are happening to me are noticeable, and without context, people could (and might have already) formed a conclusion.
Without any other information to go one, it might appear that I’m “ghosting” people or intentionally not being responsive. It might seem like I’m unable and/or unwilling to message/email/call people back, meet deadlines, and/or fulfill commitments. It might seem that I’m becoming increasingly disorganized and that I’m more “scatterbrained” than usual. It might seem like as of late I’ve become pretty distant; I’ve been told by quite a few people that they assumed from my lack of contact, etc. that perhaps our friendship/connection/relationship had ended.
There have also been some actions that I have engaged in that would have been considered fairly uncharacteristic of me, including personality changes and/or unexpected words/behavior/reactions, that might have confused, disappointed, and/or angered others at times. For example, I’ve “gone off” on quite a few people and groups - in some instances, publicly. (Don’t get me wrong…some of the time, that was simply me asserting myself and my feedback for the other entity, even if somewhat harsher than usual, was well-deserved. But other times, it certainly was not.)
What am I getting at? I’m beginning to wonder the same myself. I have no idea what I’m seeking to accomplish with this other than I don’t want to feel like any aspect of my life is a lie. I don’t want to hide. So I guess I’m just getting it out there now so that in case you are someone who has been waiting for me to reply to you, or if a deadline has come and gone and you haven’t heard anything from me about something I promised to do, or if you recently interacted with me and I seemed spacey, disoriented, or even high…or any number of things…please accept my apology and please don’t internalize it as it probably isn’t what you think. I haven’t been “myself” for some time now. I mean, I’m still me, but yet I’m not me - if that makes any sense.
So many days are such a struggle for me. I feel like a newborn…so many things drain me and it feels like I have to sleep long stretches of time in order to just do the bare minimum. The subtle as well as the not-so-subtle regressions. The growing list of things that I cannot do (or can still do, but not well) that were once practically effortless for me. The “close calls” that frighten me.
Then there are the good days (or good portions of days). Those days are like the sunshine on my face on a summer afternoon in SoCal. They’re so right. On those days, when I’m on, I am so on. I’m invigorated, energized, contemplative, active, engaged. The days that I feel like “me” again.
I never know which one it’s going to be.
I will close this with a list of what I don’t want.
-I don’t want to be interrogated. And that’s not because I have anything to hide. This is real (you have no idea how much I wish it wasn’t); I’ve got the not-so-lovely pieces of paper to prove it. (And IMO, as a person going through this, I personally think someone would have to be really depraved to make something like this up, and I couldn’t have any respect for such a person.) But I doubt that I have the capacity to field questions and/or give detailed explanations right now. You are welcome to draw conclusions as you see fit, but please don’t expect me to confirm or deny them. I don’t feel like openly stating my specific diagnosis nor its “severity level” or anything else - if/when I am ready, I will later.
-I don’t want to be patronized. I ain’t dead yet, neither am I “a child in an adult’s body.” No adult is a “child.” Currently, I am what is considered “lucid.”(Such a horrible word, BTW.) In fact, presently I still have the ability to do several things much of the time, though there are definitely some things that I cannot do sometimes as well as some things that I cannot do at all. There are also some things that I can do if provided support and/or if I do them differently than I might be accustomed to. However, even if tomorrow I lose the capacity to do all of those things and/or it appears that I am no longer aware of my surroundings or comprehending what is happening and/or my cognitive ability decreases exponentially, I’m still Morénike. By virtue of the fact that I am human, I - like everyone else - deserve to be treated with and spoken to - and spoken about - with respect and dignity. I’m cool with well-wishes, prayers, encouragement, or whatever. In fact, I welcome that. But please don’t use me nor my condition as an excuse to perpetuate ableism or to stigmatize disability even further. I read an article recently about Muhammad Ali that made my stomach turn. He was a man both before and after Parkinson’s, but you wouldn’t have gleaned that from the demeaning way this article wrote about him.
-I don’t want to be rendered obsolete because of this. People are fickle and often disappear when you’re no longer useful to them, moving on to the next “flavor of the month.” I already know that’s going to happen, so I’m not talking to those people; I’m talking to y’all - the ones I believe to be real. I’m asking you, in earnest, not to stop working with me. I don’t know what the future holds, but as of right now, though I definitely struggle with executive functioning, memory, and certain things that require traditional repeated joint sustained interaction over time, I am still a force to be reckoned with. Let me assure you: I can still give keynote addresses; I can still lead webinars; I can still participate in and moderate panels; I can still engage in research tasks and advocacy; I can still write. And at the risk of sounding pompous, I’m d@mn good at these things too, even with what I’m dealing with. (Heck, especially with what I’m dealing with. It’s a core part of who I am. Plus, aside from this being something that I find deeply meaningful - it’s essentially like a “ministry” of sorts to me, it is also how I support myself as I no longer teach.
Now, I can’t promise I will be able to do what I do five years from now or even a year from now (though I pray that I will). But right now I still can, and “canceling” me as a result of my health is one of the worst things you could do to me and my family right now. While I am still capable of doing so, it is imperative that I do as much as I can to make things easier for later when my family will need to be heavily responsible for my care. With no exaggeration, if everything dries up right now, it will destroy us in a manner that’s far more devastating than anything that is happening to me internally.
-I don’t want this to be a “Get out of jail free,” card, but I do ask for grace. I am and have always been an imperfect person. This diagnosis doesn’t change that. I try my d@mndest to put good into the world - not just because of my faith, but because I want to at all times be striving to become the best version of me I can be, even knowing I will fall short. I try to be ethical, truthful, and kind to others. But I make mistakes. I mess up. I “drop the ball.” It is seldom intentional, but it does happen. It will probably be happening more and more as my condition progresses. I’m not saying this to suggest that people shouldn’t be accountable - and “people” absolutely includes me. I’m just trying to be proactive given that metaphorically, my already dwindling drawer of “spoons” is perpetually empty and I’ve been resorting to forks, eating by hand, using disposable spoons, etc. as a result. As such, I ask humbly, in advance, for you to please try to be understanding of my (past, present, and future) shortcomings. I apologize now, in earnest, for the times I should have apologized in the past, but didn’t, as well as for the times in the future that I will owe you an apology that I may no longer be able to give.
-I don’t want you to feel disregarded if you show support and I don’t acknowledge it directly. This is truly a case of “It’s not you; it's me,” and I mean that wholeheartedly. I struggle with social communication even when I’m at my very best. It is even more so now. I fluctuate between being “okay” to being in a pretty low place to being optimistic. Just my thoughts overwhelm me. Part of me wants to delete ALL of this right now and just put the covers over my head. Part of me secretly hopes that some people will care and will share encouraging thoughts, prayers, whatever that I can have to review when I’m struggling. But all of me knows I am not in a psychological state to offer the virtual, email, text, or phone versions of “Thank you” cards. That sounds awful, doesn’t it? Probably sounds extremely unappreciative. It isn’t meant to be. I’m just trying to be real.
I am NOT saying don’t reach out or whatever. Please do, should you feel led to do so. Just forgive me if I read and don’t respond. Forgive me if you email me and I have someone else reply in place of me. Please don’t make me feel bad for not overtly expressing appreciation even when I feel it in abundance. I’m very much still trying to wrap my mind around this.
-I don’t want to be my own worst enemy; please help me not to be. Interdependence is a fact of life. Unfortunately, I have a hard time asking for certain types of help. I realize that compared to so many people, I have an enormous amount of privilege, which makes me reluctant to “put my hand out” when others have needs and problems far larger than I could imagine. But my hang ups shouldn’t have to impact my family. I’m not asking for anything for myself because I am okay. However, if it would be prudent/wise/whatever to set something up for my children, I am not going to let misplaced pride or whatever might be going on in my emotions impede that. I don’t have any provisions for them because I thought I would still have time. (And prayerfully, I might still have time, but I just don’t know.) I don’t have any type of life insurance policies (and I certainly won’t be able to get one now). I don’t have any kind of trust or anything like that for them. At one point I did have a college fund set up for the children, but it no longer exists. We had to drain every penny (in addition to crowdfunding) when we had to take legal action to keep our family together years ago and have never replenished it.
I’m not saying now, or next week, or next month, or even next year. In fact, the most
optimal outcome, in my opinion, would be for me to remain stable and none of this will ever be needed. But should things go “south” one day and my husband ends up being a single parent, please, please, please don’t forget my babies. They never asked for any of this, and I don’t want their lives to be totally derailed as a result of what might happen in my future.
If I eventually fade into the horizon, that might be my path and I’ll travel it. But I implore you, if you have the means and even a sliver of willingness, if you can find some way to contribute materially to some sort of mechanism for ensuring my family will be okay in the event of my demise, please do so.
I don’t know how any of this works, but I’m going to entrust that my siblings and my “sister from the Mister” Leslie R. will be able to set up whatever needs to be set up on the children’s behalf, and prayerfully some of the organizations I have been involved with through the years - many of which have become pretty much like family to me - might render some support as well.
I’m going to be okay, y’all. Everything will turn out however it’s supposed to turn out. I have already lived such a blessed life. Loving parents and siblings; an amazing husband; six even more amazing kids; phenomenal extended family and in-laws; so many wonderful friends and colleagues; completing my BA, MA, and PhD; so many different opportunities that have been afforded to me to make changes, however incremental, that will help transform this world into a better place. I’ve had a lot of storms in my life too, but God has always carried me through and I am grateful.
Ending now.
Thank you for your patience with the looooong update.
MGO, 28th of September 2022
